Video

What is it like to have CVI?

Perkins is at the forefront of addressing the leading cause of blindness in children. CVI, or Cortical/Cerebral Visual Impairment, is the leading cause of blindness in children. For a child with CVI, the world can be an overwhelming, exhausting place.

Perkins is at the forefront of addressing the leading cause of blindness in children.

CVI, or Cortical/Cerebral Visual Impairment, is the leading cause of blindness in children. For a child with CVI, the world can be an overwhelming, exhausting place. What they see is a swirling mass of color, motion and light. Other people with CVI tell us they can see objects and people but struggle to recognize even their own parents.

…what matters is that we can help kids with CVI make sense of their world, as long as we can help them early.

— Ed Bosso, President of Educational Programs at Perkins

CVI affects an estimated 150,000 kids in the U.S. alone. Every person with CVI experiences things differently. But what matters is that we can help kids with CVI make sense of their world, as long as we can help them early. The time to help children with CVI is now.

What you need to know about CVI:

  1. CVI is the leading cause of visual impairment in children. CVI is a neurological-based disorder that can be the result of a number of different medical conditions. Possible causes include developmental brain anomalies, a prenatal lack of oxygen and head injuries.
  2. CVI is a widely misunderstood and underdiagnosed. The fact that many children have other disabilities in addition to CVI, including ocular visual impairments, can make diagnosing CVI difficult. Each child has a unique combination of visual behaviors and compensatory skills. Children and adults with CVI have different severity levels of visual impairment. 
  3. CVI requires a different approach than other visual impairments. CVI requires unique assessments in order to effectively adapt a child’s home and school environment, including daily activities like getting dressed, navigating complex routes, reading and more. Functional modifications of the environment are important to help the child achieve greater progress and independence. There’s no one-size-fits-all model, and each child is unique. 
  4. Our knowledge of CVI is constantly evolving. As research continues among the CVI population, scientists are learning more about the brain, the visual system, and the characteristics of this condition. 
  5. Perkins is focused on training more teachers and leading medical professionals about CVI. We’re offering the first and only CVI certification program for vision professionals through the University of Massachusetts, Boston, along with the most trusted and comprehensive catalogue of online courses. We’re also bringing the best minds in the field together, partnering with leading hospitals, universities and research institutions to create a collaborative approach to caring for children with CVI.
  6. There are many resources to find out more about CVI. With a surge in the amount of information available about CVI, Perkins developed CVINow.org as a critical epicenter of information for families with children of CVI as well as the CVI Center full of tools and resources.

CVI is unpredictable. Some days are clearer than others. Today I woke up and my vision is off. My nystagmus likes to work with my CVI to make seeing sometimes impossible.

Tina, an adult with CVI

The time to talk about CVI is now.

Consider donating today to help Perkins address the leading cause of blindness in children.